Autism, Dementia, and Post-Diagnostic Support: A Consensus Report from the Second International Summit on Intellectual Disabilities and Dementia
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| Title: | Autism, Dementia, and Post-Diagnostic Support: A Consensus Report from the Second International Summit on Intellectual Disabilities and Dementia |
|---|---|
| Language: | English |
| Authors: | Matthew P. Janicki (ORCID |
| Source: | Autism: The International Journal of Research and Practice. 2026 30(6):1635-1653. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 19 |
| Publication Date: | 2026 |
| Sponsoring Agency: | National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) (DHHS/CDC) |
| Contract Number: | 1NU58DP0067820100 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Autism Spectrum Disorders, Dementia, Adults, Multiple Disabilities, Caregivers, Caregiver Training, Caregiver Role, Drug Therapy, Clinical Diagnosis, Barriers, Environmental Influences |
| DOI: | 10.1177/13623613261416670 |
| ISSN: | 1362-3613 1461-7005 |
| Abstract: | Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults--many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues--and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population. |
| Abstractor: | As Provided |
| Entry Date: | 2026 |
| Accession Number: | EJ1506442 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwF2Zlb7kLLcnHHgS_e1nkJAAAAA4jCB3wYJKoZIhvcNAQcGoIHRMIHOAgEAMIHIBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDMaxD7Ls9hia7jXfcgIBEICBmv3MT70NgXhX5G7M-vpJxqyS4V8p9ipr73VL3UtVJxbqauN3fVE3Jscyq1axs9VqQbJW1AYzaHZUaQic99eDf7aJNO8uHAfEVOI1ILOcw8rPkzpHasGMDuKPvpKn7S63tuZsinwd7P8xKBWly89ao-kGfQG_uqOabrU2hk5rUKldAByQiRnR8qY-S3VLPYiI2eEe401w3GhahVk= Text: Availability: 1 Value: <anid>AN0193858183;f9d01jun.26;2026May21.02:15;v2.2.500</anid> <title id="AN0193858183-1">Autism, dementia, and post-diagnostic support: A consensus report from the Second International Summit on Intellectual Disabilities and Dementia </title> <p>Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults—many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues—and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population. Autistic adults who develop dementia often experience challenges that are not well addressed by current dementia care systems. After a dementia diagnosis, people may need help with memory, communication, behavior changes, and daily living. For autistic adults, these supports must be adapted to their individual sensory sensitivities, communication styles, and social differences. This article reports on the work of an international group of researchers, clinicians, and advocates who met during the Second International Summit on Intellectual Disability and Dementia. The group examined how post-diagnostic support for autistic adults with dementia could be improved. They reviewed existing evidence, identified key barriers to care, and proposed strategies to strengthen services in areas such as medication use, environmental design, caregiver training, and personalized care planning. The report emphasizes that many autistic adults also have intellectual disabilities, mental health conditions, or long-term physical health issues, which can make care more complex. Current dementia care frameworks often overlook these overlapping needs, resulting in limited or unsuitable supports. The authors call for more research, workforce training, and autism-informed policy changes to ensure that post-diagnostic care is equitable, individualized, and responsive. Enhancing understanding and adapting support can help autistic adults with dementia maintain dignity, comfort, and quality of life.</p> <p>Keywords: ASD; autism; dementia; environmental adaptations; long-term care; non-pharmacological interventions; post-diagnostic supports</p> <hd id="AN0193858183-2">Introduction</hd> <p>Post-diagnostic support is a critical component of high-quality dementia care.[<reflink idref="bib8" id="ref1">8</reflink>] Following diagnosis, individuals and carers face evolving cognitive, emotional, social, and functional challenges requiring proactive, person-centered responses. Evidence-based supports—including medication management, psychosocial interventions, carer training, environmental modifications, and care coordination—can improve quality of life, support autonomy, and delay decline ([<reflink idref="bib7" id="ref2">7</reflink>]). Yet, implementation remains inconsistent, especially for populations whose experiences diverge from typical aging trajectories.</p> <p>Older autistic adults are one such underserved group. Historically, autism research and services have focused on children and young adults, while the needs of autistic individuals entering older age have been overlooked in both research and planning ([<reflink idref="bib24" id="ref3">24</reflink>]; [<reflink idref="bib65" id="ref4">65</reflink>]; [<reflink idref="bib87" id="ref5">87</reflink>]; [<reflink idref="bib125" id="ref6">125</reflink>]). Emerging evidence suggests possible heightened risk for dementia or atypical neurocognitive patterns among autistic adults, particularly those with co-occurring neurodevelopmental conditions ([<reflink idref="bib124" id="ref7">124</reflink>]; [<reflink idref="bib130" id="ref8">130</reflink>], [<reflink idref="bib129" id="ref9">129</reflink>]). However, dementia presentation, diagnostic approaches, and appropriate post-diagnostic care for this population remain poorly defined.</p> <p>Autism is estimated to affect some 2% of adults, with a 4:1 male-to-female ratio and no significant variation by race or ethnicity ([<reflink idref="bib14" id="ref10">14</reflink>]; [<reflink idref="bib34" id="ref11">34</reflink>]; [<reflink idref="bib140" id="ref12">140</reflink>]). Although concerns have been raised that lifelong neurodevelopmental differences may increase the likelihood of earlier or more subtle signs of cognitive decline, there are no reliable data on the prevalence of dementia among older autistic adults or on their enrollment in dementia-specific care services ([<reflink idref="bib62" id="ref13">62</reflink>]; [<reflink idref="bib65" id="ref14">65</reflink>]; [<reflink idref="bib69" id="ref15">69</reflink>]). Demographic patterns reveal that fewer autistic people are identified in later life, largely due to historic underdiagnosis, the use of stricter diagnostic criteria than in past decades, premature mortality, and the challenges of recognizing autism in older age ([<reflink idref="bib48" id="ref16">48</reflink>]; [<reflink idref="bib56" id="ref17">56</reflink>]; [<reflink idref="bib69" id="ref18">69</reflink>]; [<reflink idref="bib117" id="ref19">117</reflink>]). These gaps highlight the pressing need for longitudinal and population-based studies to establish dementia risk and prevalence in this overlooked group and to anticipate future demand on dementia care supports.</p> <p>Designing effective supports is further complicated by the heterogeneity of autistic adults, whose cognitive profiles, communication styles, sensory preferences, co-occurring conditions, and support needs vary widely ([<reflink idref="bib104" id="ref20">104</reflink>]). Those with lower support needs may resist deficit-oriented medical models, instead favoring autonomy, peer-led approaches, and services aligned with neurodiversity values. Nonetheless, they often rely on conventional services when navigating physical comorbidities or cognitive decline. Conversely, autistic adults with higher support needs—often embedded in structured service systems—may experience more complex dementia phenotypes that challenge diagnostic clarity and demand individualized, coordinated care. Their services often span both disability and aging sectors, which are frequently fragmented and ill-equipped to manage intersecting needs.</p> <p>As life expectancy increases among autistic individuals, the intersection of autism and aging presents an urgent but under-addressed public health concern ([<reflink idref="bib102" id="ref21">102</reflink>]; [<reflink idref="bib108" id="ref22">108</reflink>]). Many autistic adults also experience co-occurring intellectual disabilities (IDs), psychiatric conditions, and chronic health problems, complicating dementia recognition and care. Sensory and communication differences, along with dependence on long-term caregiving arrangements, further underscore the need for individualized, autism-informed care strategies. However, most dementia care frameworks were not designed with these factors in mind, leaving significant gaps in post-diagnostic support.</p> <p>Prevalence estimates of dementia in autistic adults remain uncertain due to wide diagnostic variability, limited longitudinal data, and the complex interaction of neurological and endocrinological factors associated with autism. The broad range of cognitive trajectories and baseline differences in functioning further complicate the differentiation of dementia-related decline from lifelong neurodevelopmental features. While Alzheimer's disease does not appear to be strongly associated with autism, several studies have pointed to a potentially higher rate of frontotemporal dementia, suggesting distinct neuropathological pathways in some cases ([<reflink idref="bib60" id="ref23">60</reflink>]; [<reflink idref="bib66" id="ref24">66</reflink>]). Although emerging evidence indicates possible differences in risk and clinical presentation ([<reflink idref="bib88" id="ref25">88</reflink>]; [<reflink idref="bib119" id="ref26">119</reflink>]; [<reflink idref="bib138" id="ref27">138</reflink>]), findings remain preliminary. Consequently, timely diagnosis and intervention are often difficult, and persistent gaps in clinical expertise, care coordination, and autism-informed service models continue to limit access to appropriate supports.</p> <p>To address existing gaps in knowledge and practice, the Second International Summit on Intellectual Disability and Dementia convened a multidisciplinary working group to examine autism and dementia from a post-diagnostic perspective. Drawing on international expertise, the group explored diagnostic challenges, lived experiences, environmental influences, and support strategies. The resulting consensus report, <emph>Autism, Aging, and Dementia: A Consensus Report of the Autism/Dementia Work Group of the Second International Summit on Intellectual Disability and Dementia</emph> ([<reflink idref="bib62" id="ref28">62</reflink>]), presents a foundational framework for integrating autism-informed principles into dementia care. Related publications include a summary of key issues concerning autism and dementia ([<reflink idref="bib65" id="ref29">65</reflink>]) and a companion article that focuses on assessment and diagnostics related to autistic adults with dementia ([<reflink idref="bib66" id="ref30">66</reflink>]). In this present article, we synthesize current evidence on pharmacological and non-pharmacological interventions and examine how systemic, social, clinical, and environmental factors shape care delivery. Collectively, these findings highlight the urgent need for tailored, evidence-informed care models that honor the distinct needs and strengths of autistic adults experiencing neurodegenerative decline.</p> <hd id="AN0193858183-3">Approach</hd> <p>This article draws on proceedings from the Second International Summit on Intellectual Disability and Dementia, held October 24–25, 2023, in Toronto, Ontario, Canada. Building on a prior convening in Glasgow, Scotland, in 2016 ([<reflink idref="bib134" id="ref31">134</reflink>]), the Summit brought together an international, multidisciplinary group to address three core topics: human rights and ID; co-occurring neuroatypical conditions, particularly autism and fragile X syndrome; and brain health and wellness practices. Structured plenaries and facilitated breakout discussions engaged approximately 30 participants in examining current challenges and innovations across clinical, research, policy, and support service domains.</p> <p>Following the 2023 Summit, the Autism/Dementia Work Group (A/DWG) was tasked with conducting a comprehensive synthesis on autism and dementia. The group reviewed existing literature, integrated clinical perspectives, and evaluated current diagnostic practices, lived experiences, treatment interventions, and post-diagnostic supports for autistic adults. Findings underwent multiple rounds of review by Summit participants and external advisors to ensure rigor and consensus. The final report was released by the Secretariat of the International Summits on Intellectual Disability and Dementia in early 2024 (https://<ulink href="http://www.the-ntg.org/projects/toronto-summit">www.the-ntg.org/projects/toronto-summit</ulink>).</p> <p>To facilitate broader dissemination, the findings were organized into three thematic articles: cross-cutting issues in autism and dementia ([<reflink idref="bib65" id="ref32">65</reflink>]), diagnostic challenges in dementia ([<reflink idref="bib66" id="ref33">66</reflink>]), and the present article, which focuses on post-diagnostic supports. In the first publication ([<reflink idref="bib65" id="ref34">65</reflink>]), we synthesized literature on dementia etiology and risk, highlighting the complex and underexplored relationship between autism and dementia, particularly in older adults, where prevalence is often influenced by co-occurring ID or Down syndrome (DS). The second publication ([<reflink idref="bib66" id="ref35">66</reflink>]) emphasized the need for comprehensive evaluations tailored to autism-specific traits, sensory sensitivities, and alternative communication methods, while also addressing the importance of building diagnostic capacity within clinical practice.</p> <hd id="AN0193858183-4">Observations</hd> <p>The A/DWG recognized that autistic adults comprise a highly diverse spectrum, ranging from individuals with relatively low support needs to those requiring substantial assistance, often amplified by co-occurring conditions such as ID. In this article, we note that while certain post-diagnostic supports are relevant across the spectrum, others resemble the types of care typically offered to adults with dementia more broadly. The literature similarly reflects this variability: studies on autistic adults with lower support needs are limited, whereas research is more extensive for those with both autism and ID. In the following section, we aim to clarify these distinctions and their implications for post-diagnostic support.</p> <p>The A/DWG identified seven critical facets of post-diagnostic support for autistic adults with dementia: (<reflink idref="bib1" id="ref36">1</reflink>) support structure and components; (<reflink idref="bib2" id="ref37">2</reflink>) implementation challenges; (<reflink idref="bib3" id="ref38">3</reflink>) caregiving context variations; (<reflink idref="bib4" id="ref39">4</reflink>) pharmacological and non-pharmacological interventions; (<reflink idref="bib5" id="ref40">5</reflink>) treatment barriers; (<reflink idref="bib6" id="ref41">6</reflink>) environmental factors; and (<reflink idref="bib7" id="ref42">7</reflink>) dementia care planning.</p> <hd id="AN0193858183-5">Structure and components of post-diagnostic support</hd> <p></p> <hd id="AN0193858183-6">Diagnostic challenges</hd> <p>Diagnosing dementia in autistic adults presents distinct challenges, such as overlapping features of autism, co-occurring health conditions, and psychiatric disorders that can obscure or mimic the clinical signs of dementia. Standard assessment tools are often inadequate, underscoring the need for adapted diagnostic approaches that account for differences in communication, sensory processing, and lifelong neurodevelopmental traits ([<reflink idref="bib39" id="ref43">39</reflink>]; [<reflink idref="bib66" id="ref44">66</reflink>]; [<reflink idref="bib114" id="ref45">114</reflink>]; [<reflink idref="bib127" id="ref46">127</reflink>]). Greater diagnostic accuracy can be achieved through longitudinal observation and multidisciplinary collaboration, while emerging methods such as biomarkers and neuroimaging hold promise but remain underutilized. Yet, diagnosis marks only the beginning. Ensuring a seamless transition from assessment to post-diagnostic support is vital for sustaining quality of life and addressing the unique needs of autistic adults as they age.</p> <p>For some older autistic individuals, particularly those with co-occurring ID or severe functional limitations, a definitive diagnosis may be unattainable due to limited communication, baseline variability (i.e., differences in an individual's typical level of cognitive, behavioral, and functional performance that make it difficult to detect change), and the lack of validated tools for this subgroup. In such instances, clinicians and support teams face a difficult balance: the absence of a confirmed diagnosis can restrict access to dementia-specific services, even when care needs are evident. The A/DWG emphasizes that care planning should nonetheless proceed based on observed functional changes, caregiver insights, and individualized assessments. Flexible, needs-driven approaches, rather than strict diagnosis-based eligibility, are essential to ensure that this highly vulnerable group receives appropriate and responsive support.</p> <hd id="AN0193858183-7">Care following diagnosis</hd> <p>Post-diagnostic support encompasses the array of services and interventions provided after a dementia diagnosis. For autistic adults, these supports must be personalized and flexible, addressing cognitive, emotional, communicative, social, and daily living needs that can vary widely between individuals. Support may need to be continuous or episodic depending on the person's abilities, routines, and environmental demands. Autism-informed care emphasizes predictability, sensory and environmental accommodations, accessible communication strategies, and a strengths-based approach that promotes autonomy, engagement, and emotional well-being.</p> <p>In the general population, post-diagnostic care typically includes ongoing assessment, psychosocial education, carer support, and coordination across health and social services ([<reflink idref="bib12" id="ref47">12</reflink>]; [<reflink idref="bib93" id="ref48">93</reflink>]). For individuals with ID and dementia, additional components—such as grief and behavioral counseling, structured activity planning, and advance or end-of-life care—are often necessary ([<reflink idref="bib35" id="ref49">35</reflink>]). Strategies to address these elements for people with ID require modification toward more person-centered approaches, shifting the "philosophical" goals of pre-diagnostic support—emphasizing independence and autonomy—toward post-diagnostic priorities that recognize increasing needs for hands-on assistance, predictable routines, and structured supports ([<reflink idref="bib116" id="ref50">116</reflink>]). However, few established models extend these principles to autistic adults with dementia, a group whose unique sensory, communicative, and behavioral profiles demand further adaptation and innovation ([<reflink idref="bib114" id="ref51">114</reflink>]).</p> <p>Access to post-diagnostic supports is also shaped by national and regional service systems. Market-based models, such as those in the United States and United Kingdom, tend to limit availability of specialized dementia services for adults with autism or ID, while welfare-based systems, such as those in the Nordic countries, generally offer more comprehensive and equitable supports ([<reflink idref="bib2" id="ref52">2</reflink>]; [<reflink idref="bib41" id="ref53">41</reflink>]; [<reflink idref="bib57" id="ref54">57</reflink>]). Although ID-focused frameworks ([<reflink idref="bib24" id="ref55">24</reflink>]) provide some direction, they require additional refinement to address autism-specific concerns—especially sensory sensitivities, communication diversity, and the need for consistent, lifelong support structures.</p> <p>The A/DWG has emphasized that effective post-diagnostic care must prioritize stable housing, individualized care planning, and continuity in caregiving relationships. To sustain quality of life and preserve autonomy, post-diagnostic models should reflect the lived realities and aging trajectories of autistic adults with dementia. Structural reforms are urgently needed to reduce service fragmentation, broaden eligibility criteria, and strengthen coordination between health, disability, and community care systems.</p> <hd id="AN0193858183-8">Challenges in delivering post-diagnostic support</hd> <p>Many autistic adults with high support needs continue to depend on unpaid family carers, often aging parents, who shoulder complex responsibilities such as navigating fragmented services, managing neuropsychiatric changes, and coordinating healthcare ([<reflink idref="bib10" id="ref56">10</reflink>]; [<reflink idref="bib11" id="ref57">11</reflink>]; [<reflink idref="bib37" id="ref58">37</reflink>]). As these carers age, they experience declining health, increased isolation, and limited access to planning resources ([<reflink idref="bib85" id="ref59">85</reflink>]). Some must also navigate both aging and disability service systems, which are rarely coordinated. Meanwhile, rising diagnoses among autistic adults highlight a growing group who live independently (often with limited natural supportive relationships) but may still face significant support gaps.</p> <hd id="AN0193858183-9">Gaps in dementia care models for autistic adults</hd> <p>While awareness of dementia in autistic adults is increasing, national policy frameworks rarely account for the unique and often compounded challenges facing their carers ([<reflink idref="bib120" id="ref60">120</reflink>]). Existing dementia care models, such as the University of California San Francisco's Care Ecosystem ([<reflink idref="bib126" id="ref61">126</reflink>]), Partners in Dementia Care, the Aging Brain Care Program, and MIND at Home<sups>®</sups>, emphasize coordinated, person-centered approaches ([<reflink idref="bib15" id="ref62">15</reflink>]; [<reflink idref="bib70" id="ref63">70</reflink>]; [<reflink idref="bib113" id="ref64">113</reflink>], [<reflink idref="bib112" id="ref65">112</reflink>]). However, these models are typically grounded in medical paradigms and have limited applicability to individuals with co-occurring neurodevelopmental conditions. In the United States, for example, while some federally funded programs targeting dementia care (e.g., the Administration of Community Living's Alzheimer's Disease Program Initiative) are beginning to include a focus on people with ID ([<reflink idref="bib96" id="ref66">96</reflink>]), few initiatives address the complex intersection of autism and dementia. The new GUIDE Model ([<reflink idref="bib25" id="ref67">25</reflink>]), a dementia carer support initiative in the United States, shows promise for broader applicability to the autism community ([<reflink idref="bib97" id="ref68">97</reflink>]), but outcomes remain under evaluation ([<reflink idref="bib93" id="ref69">93</reflink>]).</p> <p>In both the United States and Canada (as in most other countries), many autistic adults with high support needs continue to live with family ([<reflink idref="bib10" id="ref70">10</reflink>]; [<reflink idref="bib11" id="ref71">11</reflink>]; [<reflink idref="bib16" id="ref72">16</reflink>]). Despite this, alternative housing options and long-term care planning remain limited. Carers often report a lack of trained providers, few autism-adapted care models, and inadequate post-diagnostic supports ([<reflink idref="bib114" id="ref73">114</reflink>]).</p> <hd id="AN0193858183-10">Risks of missed support and inadequate care</hd> <p>Autistic adults without consistent caregiving, particularly those who live alone or experience housing instability, face increased risks of crisis, self-neglect, and poor health outcomes ([<reflink idref="bib27" id="ref74">27</reflink>]; [<reflink idref="bib76" id="ref75">76</reflink>]; [<reflink idref="bib77" id="ref76">77</reflink>]; [<reflink idref="bib122" id="ref77">122</reflink>]). In the absence of regular support, early signs of dementia may be missed, leading to delayed diagnoses, unmanaged symptoms, and preventable emergencies. These emergencies may be compounded when law enforcement personnel lack training in recognizing and responding appropriately to individuals with autism and dementia, potentially resulting in harmful encounters ([<reflink idref="bib23" id="ref78">23</reflink>]). Even in countries with strong social welfare systems, such as the Nordic states, access to individualized, dementia-informed care remains inconsistent due to regional disparities, limited staff expertise, and a lack of integrated service models that address the combined needs of neurodevelopmental and neurodegenerative conditions ([<reflink idref="bib75" id="ref79">75</reflink>]; [<reflink idref="bib77" id="ref80">77</reflink>]). Addressing these challenges will require proactive outreach and systemic reforms to ensure continuity and adequacy of care for autistic adults as they age.</p> <p>In sum, addressing the evolving needs of autistic adults with dementia requires integrated, systemic action. Priorities include expanding respite care, developing autism-informed dementia services, and investing in training, housing, and care coordination. Without strategic investment, both autistic adults and their carers will remain critically underserved.</p> <hd id="AN0193858183-11">Post-diagnostic support across caregiving contexts</hd> <p>Caring for autistic adults with dementia, especially those with co-occurring ID and high support needs, places sustained demands on carers that often exceed individual capacity. Respite care, essential for relieving carer burden and maintaining well-being, remains underutilized due to financial barriers, limited public funding, regional disparities, and a shortage of professionals trained in both autism and dementia care ([<reflink idref="bib48" id="ref81">48</reflink>]; [<reflink idref="bib50" id="ref82">50</reflink>]; [<reflink idref="bib86" id="ref83">86</reflink>]). These challenges are most acute for carers providing high levels of supervision and personal care. Despite its benefits, respite remains inaccessible for many, highlighting the need for expanded policies and a dual-trained care workforce.</p> <p>Informal supports, such as peer-led discussion groups and online communities, can buffer psychological distress and enhance coping ([<reflink idref="bib46" id="ref84">46</reflink>]; [<reflink idref="bib51" id="ref85">51</reflink>]). Many carers prefer these relational, low-barrier supports to formal services ([<reflink idref="bib50" id="ref86">50</reflink>]). Yet few networks address the dual demands of autism and dementia. Expanding tailored peer groups could promote emotional resilience and care sustainability ([<reflink idref="bib83" id="ref87">83</reflink>]).</p> <p>Carer stress, anxiety, and burnout are common ([<reflink idref="bib54" id="ref88">54</reflink>]), especially among aging parents or older siblings facing their own health declines and increasing social isolation. Individual coping strategies (e.g., exercise, spirituality, self-care) may offer only temporary relief ([<reflink idref="bib85" id="ref89">85</reflink>]). Coordinated systems that address both practical and emotional caregiving needs are critical.</p> <hd id="AN0193858183-12">Compound caregiving</hd> <p>Compound caregiving, where individuals support both an aging parent and an autistic relative with dementia, further strains families and is rarely addressed in current systems ([<reflink idref="bib64" id="ref90">64</reflink>]; [<reflink idref="bib71" id="ref91">71</reflink>]; [<reflink idref="bib84" id="ref92">84</reflink>]; [<reflink idref="bib85" id="ref93">85</reflink>]). Caregivers may be balancing the needs of multiple generations, often without adequate guidance on managing the cognitive, behavioral, and physical changes associated with aging and dementia in autism. In these situations, cultural expectations can also shape caregiving roles, with some families facing added pressure to provide care within the household regardless of capacity or available support ([<reflink idref="bib58" id="ref94">58</reflink>]). While respite and community-based resources are essential to sustaining carers in these roles and preventing burnout ([<reflink idref="bib50" id="ref95">50</reflink>]; [<reflink idref="bib54" id="ref96">54</reflink>]; [<reflink idref="bib86" id="ref97">86</reflink>]), access remains inconsistent due to workforce shortages, geographic inequities, and a lack of professionals trained in both autism and dementia care.</p> <hd id="AN0193858183-13">Dementia care in neurodiverse partnerships</hd> <p>Neurodiverse couples—where one or both partners are autistic—represent a largely overlooked group in dementia caregiving research, despite unique challenges that differentiate them from more commonly studied spousal or parent–adult child caregiving dyads. While spousal caregiving in neurotypical relationships is well documented ([<reflink idref="bib21" id="ref98">21</reflink>]; [<reflink idref="bib105" id="ref99">105</reflink>]), the dynamics of neurodiverse partnerships remain poorly understood, particularly as cognitive decline emerges in one partner ([<reflink idref="bib92" id="ref100">92</reflink>]; [<reflink idref="bib139" id="ref101">139</reflink>]). Unlike parent–adult child caregiving, partner caregiving involves profound shifts in identity, emotional reciprocity, and intimacy, compounded by the need to assume personal care responsibilities that may conflict with long-standing relational patterns and expectations ([<reflink idref="bib92" id="ref102">92</reflink>]; [<reflink idref="bib139" id="ref103">139</reflink>]).</p> <p>Neurodiverse couples face distinctive challenges across multiple domains. The progression of dementia often requires rapid adjustments in role allocation regarding the care partner, leading to asymmetrical caregiving arrangements where one partner assumes increasing responsibility for daily living, medication management, and safety oversight. This shift can trigger heightened emotional strain, anticipatory grief, and uncertainty about the relationship's trajectory ([<reflink idref="bib133" id="ref104">133</reflink>]). Communication differences, already present in many autistic-autistic or autistic-neurotypical partnerships, can further complicate negotiation of care, resulting in misunderstandings, frustration, and social withdrawal ([<reflink idref="bib30" id="ref105">30</reflink>]). Sensory sensitivities, reliance on routines, and divergent expectations of autonomy may intensify in response to cognitive decline, increasing the risk of distress for both partners and reducing opportunities for mutual support ([<reflink idref="bib64" id="ref106">64</reflink>]).</p> <p>Neurotypical care partners often report feelings of inadequacy and emotional exhaustion when trying to meet the complex needs of an autistic partner with dementia, while autistic partners—particularly those without prior service engagement—may encounter novel safety risks, functional limitations, and heightened sensory challenges ([<reflink idref="bib92" id="ref107">92</reflink>]; [<reflink idref="bib139" id="ref108">139</reflink>]). Current service models designed to alleviate caregiver burden in ID or dementia contexts ([<reflink idref="bib64" id="ref109">64</reflink>]) rarely account for the intersectional needs of neurodiverse couples, which include the need for flexible communication strategies, sensory-sensitive environments, and relationship-centered care planning.</p> <p>Despite the limited empirical literature, emerging research highlights the urgent need for autism-informed, dyad-sensitive interventions that address the relational, sensory, and cognitive complexities within neurodiverse partnerships. Supporting such couples requires an integrated approach that attends not only to functional and safety needs but also to the emotional, relational, and anticipatory grief processes that accompany dementia progression. Tailored interventions (including structured respite, caregiver coaching, environmental adaptations, psychoeducation, and peer support) show promise in sustaining relationship quality, autonomy, and well-being for both partners across the course of dementia. These same principles are equally relevant when an autistic adult supports a parent or sibling with dementia, a situation that is likely to become increasingly common.</p> <hd id="AN0193858183-14">Supporting independent autistic adults with dementia</hd> <p>A subset of autistic adults with low baseline support needs continue to live independently following an MCI [mild cognitive impairment] or early dementia diagnosis.[<reflink idref="bib9" id="ref110">9</reflink>] However, their support requirements will intensify as dementia progresses, exacerbating pre-existing challenges in executive functioning, sensory regulation, and daily living ([<reflink idref="bib61" id="ref111">61</reflink>]). Cognitive and sensory decline can lead to disorientation, disrupted routines, and social withdrawal, significantly threatening continued independence ([<reflink idref="bib121" id="ref112">121</reflink>]). Autistic adults may also face new safety and functional challenges as dementia progresses. In such situations, the A/DWG recommends environmental adaptations, smart technologies, and structured check-in systems to promote continued autonomy and aging in place.</p> <p>Social connection, valued by autistic adults as by other aging populations, can buffer isolation and maintain well-being. Participation in autism- and dementia-specific communities (online or in-person) supports emotional stability. Yet functional decline can compromise participation in these communities as well as core tasks like cooking, medication adherence, or hygiene, increasing risks such as wandering or self-neglect. When appropriate to the context, multidisciplinary teams can be beneficial to anticipating and responding to these escalating risks ([<reflink idref="bib73" id="ref113">73</reflink>]).</p> <p>In sum, regular contact with healthcare providers or community supports can help identify early signs of neglect or safety concerns. Environmental modifications, such as visual schedules, labeled items, and sensory-friendly lighting, may support functioning and orientation ([<reflink idref="bib106" id="ref114">106</reflink>]). Technology, including smart reminders and remote monitoring, can enhance autonomy when tailored to individual cognitive and sensory profiles. While these adaptations can be effective, their impact is greatest when introduced early, as progressive cognitive decline may eventually make living alone or otherwise independently unsustainable ([<reflink idref="bib28" id="ref115">28</reflink>]). The A/DWG recommends incorporating such supports into anticipatory care planning, ideally before they become essential.</p> <hd id="AN0193858183-15">Pharmacological and non-pharmacological interventions</hd> <p>Medications play an important role in the post-diagnostic management of dementia, complementing behavioral and psychosocial supports ([<reflink idref="bib74" id="ref116">74</reflink>]). While no pharmacological treatments currently halt or reverse neurodegeneration, appropriately selected medications can help reduce behavioral and psychological symptoms, stabilize mood, and preserve functional abilities for as long as possible. Although there are no approved medications to treat the core symptoms of autism, there several medications that can treat co-occurring conditions ([<reflink idref="bib109" id="ref117">109</reflink>]). For autistic adults with dementia, medication applications require special caution: differences in communication, sensory regulation, and co-occurring medical conditions can alter both presentation and response to treatment. Careful assessment, ongoing monitoring, and clear therapeutic goals are essential to balance potential benefits against risks and to ensure that pharmacologic strategies are integrated thoughtfully within a broader, person-centered care plan.</p> <hd id="AN0193858183-16">BPSD management</hd> <p>Pharmacological management of dementia in autistic adults is extrapolated from Alzheimer's disease (AD) protocols, despite the absence of autism-specific regulatory approvals. Atypical antipsychotics and cognitive enhancers—developed for AD—are sometimes used to address overlapping symptoms in autism and dementia. Risperidone and aripiprazole, approved for autism-related irritability in the United States, are also used in AD for agitation, although caution is advised in Lewy Body dementia ([<reflink idref="bib109" id="ref118">109</reflink>]; [<reflink idref="bib115" id="ref119">115</reflink>]). Brexpiprazole is the only Food and Drug Administration (FDA)-approved medication in the United States for treating agitation in Alzheimer's disease, although its applicability to autistic adults remains untested ([<reflink idref="bib52" id="ref120">52</reflink>]).</p> <p>Cholinesterase inhibitors (e.g., donepezil, galantamine) and NMDA antagonists (e.g., memantine) may support communication, attention, and social engagement in autism, with galantamine and memantine showing promise ([<reflink idref="bib109" id="ref121">109</reflink>]). However, adverse effects—gastrointestinal (GI) distress, sedation, and behavioral regression—and heightened anticholinergic sensitivity require cautious, individualized use ([<reflink idref="bib33" id="ref122">33</reflink>]; [<reflink idref="bib100" id="ref123">100</reflink>]). Clear therapeutic goals, timelines, and discontinuation plans are essential. The A/DWG emphasizes regular medication review due to complex polypharmacy in this group.</p> <hd id="AN0193858183-17">Disease-modifying therapies and autistic adults with dementia</hd> <p>There are currently no approved pharmacologic treatments, either post-diagnostic or preventive, for individuals with co-occurring autism and dementia. This therapeutic gap is increasingly apparent with the introduction of anti-amyloid disease-modifying therapies (DMTs), such as lecanemab and donanemab, intended for early-stage Alzheimer's disease ([<reflink idref="bib31" id="ref124">31</reflink>]; [<reflink idref="bib110" id="ref125">110</reflink>]). These treatments may have limited relevance for most autistic adults, as Alzheimer's is not the predominant dementia subtype in this population ([<reflink idref="bib66" id="ref126">66</reflink>]), and their safety and efficacy remain untested in those with neurodevelopmental conditions ([<reflink idref="bib107" id="ref127">107</reflink>]). Nonetheless, autistic individuals with DS may face elevated risk for both Alzheimer's pathology and DMT-related complications, including amyloid-related imaging abnormalities (ARIAs), highlighting the need for targeted research in this area ([<reflink idref="bib59" id="ref128">59</reflink>]).</p> <p>Access to DMTs typically requires biomarker-confirmed diagnoses, yet diagnostic precision in autism is uncertain. Barriers include high costs, limited provider training, and distress caused by invasive procedures. Subcutaneous DMTs and expanded diagnostic roles may improve access ([<reflink idref="bib4" id="ref129">4</reflink>]; [<reflink idref="bib17" id="ref130">17</reflink>]; [<reflink idref="bib40" id="ref131">40</reflink>]), but their feasibility in autistic adults remains unknown. Until validated, the A/DWG sees these therapies as largely inaccessible for this population.</p> <p>In sum, pharmacologic strategies remain empirical, often off-label, and lack autism-specific efficacy data. Emerging DMTs offer little current benefit for autistic adults. The A/DWG calls for autism-informed pharmacological research, adapted diagnostics, and equitable implementation models ([<reflink idref="bib47" id="ref132">47</reflink>]; [<reflink idref="bib48" id="ref133">48</reflink>]).</p> <hd id="AN0193858183-18">Non-pharmacological post-diagnostic interventions</hd> <p>Non-pharmacological, or eco-psycho-social, interventions are essential in supporting adults with dementia, including those with autism ([<reflink idref="bib90" id="ref134">90</reflink>]). These approaches emphasize neurodiversity, autonomy, and quality of life, particularly when addressing distressing behaviors. Positive behavioral support remains central, prioritizing proactive strategies, environmental adaptations, and individualized goals over reactive or punitive responses ([<reflink idref="bib44" id="ref135">44</reflink>]). Core components include structured routines, environmental modifications, and caregiver training that takes into account somatic factors such as pain, sleep disruption, and GI dysfunction. Positive behavioral support has demonstrated effectiveness in dementia care within the general population, with emerging (though limited) evidence suggesting similar benefits for individuals with frontotemporal dementia ([<reflink idref="bib43" id="ref136">43</reflink>]).</p> <hd id="AN0193858183-19">Integrating physical and behavioral health</hd> <p>Emerging evidence highlights the importance of physical health, particularly GI issues, as a contributor to behavioral distress in autism. GI discomfort has been linked to irritability, aggression, and withdrawal, underscoring the need for integrated behavioral and physical health care in dementia contexts ([<reflink idref="bib29" id="ref137">29</reflink>]). Other somatic factors, such as deconditioning, may also influence cognitive status ([<reflink idref="bib63" id="ref138">63</reflink>]). Holistic assessments that move beyond surface-level behaviors are critical to identifying underlying medical or sensory contributors and improving quality of life ([<reflink idref="bib26" id="ref139">26</reflink>]).</p> <p>Despite growing awareness, services often fall short in providing dementia care sensitive to the needs of autistic adults due to structural limitations. Many adult autism care models are adaptations of pediatric frameworks for cognitive impairment and fail to meet the needs of aging adults with cognitive decline. Major barriers include insufficient post-diagnostic mental health support, inadequate professional training, and diagnostic overshadowing—where dementia symptoms are misattributed to autism or ID. Generic behavior plans often do not capture the nuanced behavioral presentations seen in autistic individuals with dementia. Furthermore, widely used approaches such as applied behavior analysis, particularly when focused on skill acquisition or behavior change, are largely untested and likely less effective in the context of dementia.</p> <hd id="AN0193858183-20">Cognitive stimulation therapy</hd> <p>Among clinical interventions, cognitive stimulation therapy (CST) and its variants have emerged as a potentially useful non-pharmacological intervention for people with ID and dementia, although the evidence base remains preliminary and untested with autistic adults with dementia. Feasibility studies, such as those by [<reflink idref="bib3" id="ref140">3</reflink>] and [<reflink idref="bib78" id="ref141">78</reflink>], suggest that CST and its individualized form (iCST) are acceptable to participants and caregivers, can foster engagement, and may contribute to improvements in quality of life for adults with ID. When viewed alongside cognitive remediation approaches tested in adults with autism, such as cognitive enhancement therapy ([<reflink idref="bib38" id="ref142">38</reflink>]), there is reason to consider whether CST-style interventions could also provide benefit for adults with autism who develop dementia, particularly in supporting social connection, maintaining skills, and enhancing daily engagement. Nevertheless, the current evidence does not allow strong conclusions, and the use of CST in autism and dementia remains an open question. Further research is needed to adapt CST for this population and to determine whether its benefits extend meaningfully beyond feasibility and acceptability.</p> <p>Improved interventions require strengths-based, neurodiversity-affirming frameworks. Profiling models that consider sensory processing, emotion regulation, cognitive flexibility, and perspective-taking offer a more accurate picture of changing support needs ([<reflink idref="bib72" id="ref143">72</reflink>]; [<reflink idref="bib103" id="ref144">103</reflink>]). These models are especially important where age-related cognitive changes intersect with lifelong neurodevelopmental traits.</p> <p>In sum, advancing non-pharmacological interventions for autistic adults with dementia demands interdisciplinary, person-centered approaches that integrate physical, mental, and social dimensions of health ([<reflink idref="bib95" id="ref145">95</reflink>]). While systemic gaps remain, the A/DWG notes that these approaches hold significant potential for innovation. Tailored, thoughtful non-pharmacological approaches can uphold dignity and well-being when autistic adults experience dementia.</p> <hd id="AN0193858183-21">Objective and subjective barriers in health-oriented post-diagnostic support</hd> <p></p> <hd id="AN0193858183-22">Objective barriers in healthcare systems</hd> <p>Autistic adults experiencing cognitive decline due to dementia face significant structural barriers to care. These include limited access to publicly funded informed diagnostic and support services, a critical shortage of providers trained in both autism and dementia, and fragmented coordination across healthcare, education, and social systems ([<reflink idref="bib55" id="ref146">55</reflink>]). As a result, older autistic adults frequently experience unmet needs across primary care, dental care, mental health, and dementia services.</p> <p>Despite disproportionately high rates of chronic and age-related health conditions, such as epilepsy, GI disorders, schizophrenia, suicidality, osteoporosis, and cardiovascular disease, autistic adults often struggle to navigate healthcare systems, locate informed providers, and advocate for appropriate care ([<reflink idref="bib55" id="ref147">55</reflink>]; [<reflink idref="bib131" id="ref148">131</reflink>]). Structural barriers include inflexible scheduling, overstimulating environments unfamiliar to the individual, and inappropriate communication protocols ([<reflink idref="bib32" id="ref149">32</reflink>]; [<reflink idref="bib36" id="ref150">36</reflink>]). Autistic individuals with low support needs often report feeling dismissed by clinicians, which discourages future help-seeking ([<reflink idref="bib117" id="ref151">117</reflink>]), especially when dementia further clouds self-expression and comprehension. Traditional dementia care models rarely accommodate autistic sensory or cognitive needs, often resulting in disempowering, distressing care environments ([<reflink idref="bib50" id="ref152">50</reflink>]). The A/DWG highlights the urgent need for systemic reform, including sensory-adapted clinical spaces, personalized supports, and expanded clinician training at the intersection of autism and dementia ([<reflink idref="bib13" id="ref153">13</reflink>]; [<reflink idref="bib94" id="ref154">94</reflink>]).</p> <hd id="AN0193858183-23">Subjective and psychosocial barriers</hd> <p>Beyond systemic deficits, autistic adults with MCI or early dementia face psychosocial barriers that undermine healthcare access. Cognitive decline can impair interoception, symptom interpretation, and executive function, complicating scheduling, transportation, and symptom reporting ([<reflink idref="bib117" id="ref155">117</reflink>]). Sensory sensitivities and altered pain perception may mask health issues and delay care. Medical visits often provoke anxiety due to unpredictability, sensory overload, and communication difficulties ([<reflink idref="bib32" id="ref156">32</reflink>]; [<reflink idref="bib82" id="ref157">82</reflink>]; [<reflink idref="bib89" id="ref158">89</reflink>]).</p> <p>Cognitive changes can worsen existing communication challenges, reducing narrative coherence, memory, and self-advocacy ([<reflink idref="bib67" id="ref159">67</reflink>]). Medical procedures requiring physical contact may further distress individuals sensitive to touch. These factors contribute to misdiagnosis and ineffective care. [<reflink idref="bib136" id="ref160">136</reflink>] found that autistic adults are more than twice as likely as non-autistic adults to leave appointments with unresolved health concerns. As dementia progresses, diminished ability to question, report symptoms, or understand care further elevates risk.</p> <p>Psychological factors, including past experiences of stigma and rejection, may foster internalized doubt and beliefs of unworthiness, which are often exacerbated by dementia-related emotional dysregulation ([<reflink idref="bib86" id="ref161">86</reflink>]; [<reflink idref="bib117" id="ref162">117</reflink>]). Diagnostic overshadowing, where new symptoms are attributed solely to autism, is a frequent and serious barrier ([<reflink idref="bib136" id="ref163">136</reflink>]). Overstimulating clinical environments and non-adaptive care interactions can become intolerable as executive function and resilience decline. In early dementia, care avoidance due to fear or distrust may delay treatment of comorbid conditions, worsening long-term outcomes ([<reflink idref="bib117" id="ref164">117</reflink>]). Consistent with these trends, [<reflink idref="bib136" id="ref165">136</reflink>] found higher rates of chronic illness and lower care quality among autistic adults.</p> <p>The A/DWG supports recommendations for autism-friendly healthcare, including flexible service delivery, proactive patient involvement, and pre-encounter staff preparation ([<reflink idref="bib36" id="ref166">36</reflink>]; [<reflink idref="bib53" id="ref167">53</reflink>]; [<reflink idref="bib101" id="ref168">101</reflink>]), alongside dementia-aware accommodations ([<reflink idref="bib91" id="ref169">91</reflink>]).</p> <hd id="AN0193858183-24">Intersecting identities and marginalization</hd> <p>Intersecting identities significantly shape healthcare access and interactions with providers ([<reflink idref="bib19" id="ref170">19</reflink>]). Autistic individuals are more likely than the general population to identify as lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ+) or gender diverse ([<reflink idref="bib19" id="ref171">19</reflink>]; [<reflink idref="bib111" id="ref172">111</reflink>]; [<reflink idref="bib136" id="ref173">136</reflink>]), with transgender and gender-diverse individuals being three to six times more likely to be autistic than their cisgender age peers ([<reflink idref="bib132" id="ref174">132</reflink>]). Current work on sexual and gender minorities has also linked these identities to increased dementia risk ([<reflink idref="bib79" id="ref175">79</reflink>]), with transgender men, women, and non-binary adults all showing higher late-life dementia prevalence than cisgender individuals ([<reflink idref="bib20" id="ref176">20</reflink>]). Autistic women and non-binary individuals frequently report greater marginalization and misunderstanding in healthcare settings than autistic men ([<reflink idref="bib42" id="ref177">42</reflink>]; [<reflink idref="bib45" id="ref178">45</reflink>]; [<reflink idref="bib68" id="ref179">68</reflink>]), compounding the vulnerabilities associated with cognitive decline.</p> <p>In sum, autistic adults affected by dementia face converging structural and psychosocial barriers to healthcare: system-level deficits, clinician unpreparedness, communication breakdowns, internalized stigma, and sensory overload. The A/DWG notes that these challenges demand autism-informed, dementia-aware care models featuring proactive communication, trauma-informed practices, sensory accommodations, and equitable access to diagnostic and treatment services. Without systemic reform, health disparities for this population will continue to widen across the lifespan.</p> <hd id="AN0193858183-25">Environmental influences and adaptations for dementia care in autistic adults</hd> <p>Autistic adults with dementia face a convergence of unmet needs in housing, caregiving supports, and environmental design—domains where conventional dementia services are often inadequate. Housing that accommodates both autism-related sensory sensitivities and dementia-related cognitive decline is scarce. Most autistic adults rely on long-term family caregiving, making transitions into assisted living or dementia care particularly challenging. Although research on spousal caregiving in this context is limited, related studies among adults with ID point to increasing carer burden, isolation, and challenges in future planning as dementia progresses ([<reflink idref="bib64" id="ref180">64</reflink>]).</p> <p>To meet evolving needs, residential care models must incorporate both physical and social environmental adaptations. Research in dementia care highlights the value of integrated environmental assessments to support autonomy and well-being ([<reflink idref="bib18" id="ref181">18</reflink>]; [<reflink idref="bib22" id="ref182">22</reflink>]; [<reflink idref="bib80" id="ref183">80</reflink>]; [<reflink idref="bib81" id="ref184">81</reflink>]; [<reflink idref="bib123" id="ref185">123</reflink>]). These findings are particularly relevant for autistic individuals, whose care environments should minimize sensory overload, support memory and orientation, and preserve autonomy and independence for as long as possible.</p> <hd id="AN0193858183-26">Physical environment adaptations</hd> <p>Designing dementia care environments for autistic adults requires sensory-informed planning. Controlled lighting, noise reduction, predictable layouts, and temperature regulation can reduce distress and cognitive strain ([<reflink idref="bib18" id="ref186">18</reflink>]; [<reflink idref="bib81" id="ref187">81</reflink>]). Home-like, small-scale settings help maintain familiarity and reduce confusion. [<reflink idref="bib94" id="ref188">94</reflink>] recommended that essential physical adaptations for autistic adults with progressive dementia include: (<reflink idref="bib1" id="ref189">1</reflink>) sensory environment adjustments via reducing environmental stimuli through soft lighting, noise reduction, and clutter-free layouts that can alleviate overstimulation and confusion; (<reflink idref="bib2" id="ref190">2</reflink>) safety enhancements and features such as safety features on doors and windows, predictable spatial layouts, and assistive technologies to help reduce the risks associated with wandering, sundowning, or disorientation while supporting autonomy; and (<reflink idref="bib3" id="ref191">3</reflink>) decluttering and organization through simplified, logically organized environments that reduce cognitive load and support navigation and emotional stability and visual aids can help guide movements, such as with wayfinding. These principles were endorsed by the A/DWG as foundational to creating supportive living environments.</p> <hd id="AN0193858183-27">Social environment adaptations</hd> <p>Social environments for autistic adults with dementia must be individualized, trauma-informed, and clinically responsive to both neurodevelopmental and neurodegenerative needs. Rigid routines, unpredictable transitions, excessive social demands, or sensory overstimulation—such as loud environments or crowded group settings—can intensify confusion, anxiety, and behavioral dysregulation. Conversely, personalized support plans that incorporate structured routines, clear visual or auditory cues, and accommodations for sensory sensitivities can help reduce distress and foster adaptive functioning ([<reflink idref="bib18" id="ref192">18</reflink>]; [<reflink idref="bib123" id="ref193">123</reflink>]). Predictability in daily activities, continuity in caregiving personnel, and relational familiarity are especially important as cognitive decline progresses. Staff trained in autism and dementia-informed communication techniques, such as minimizing abstract language, supporting transitions, and recognizing non-verbal distress, can help build therapeutic rapport and maintain emotional security. Interventions should also account for the individual's social preferences, capacity for engagement, and baseline behavior, with regular reassessment to adjust supports accordingly. These environmental and interpersonal strategies are essential for reducing avoidable escalation, promoting behavioral stability, and contributing to preserving dignity and quality of life as dementia progresses.</p> <hd id="AN0193858183-28">Systemic barriers and policy needs</hd> <p>Systemic inequities, such as chronically underfunded housing programs, fragmented health and social care systems, and a lack of autism-dementia-specific training, intensify environmental barriers for autistic adults with dementia, particularly those from racially, culturally, or linguistically marginalized communities ([<reflink idref="bib54" id="ref194">54</reflink>]). These groups often encounter compounding disadvantages due to discriminatory policies, cultural mismatches in service provision, and limited access to diagnostic and post-diagnostic supports. Furthermore, first responders and law enforcement officers are frequently underprepared to identify and effectively assist autistic adults with dementia during episodes of distress ([<reflink idref="bib23" id="ref195">23</reflink>]). In response, scholars increasingly advocate for integrated care frameworks that bridge autism-informed and dementia-capable service models ([<reflink idref="bib80" id="ref196">80</reflink>]; [<reflink idref="bib81" id="ref197">81</reflink>]). Such models must be grounded in principles of cultural humility, flexibility, and person-centeredness, while being supported by longitudinal research that accounts for the diverse trajectories and needs of autistic adults. Building these systems requires not only theoretical integration but also practical infrastructure, investments in workforce development, cross-sector training, and the expansion of community-based housing that is both affordable and adaptable to evolving cognitive and sensory needs. Without sustained public investment and policy alignment, inequities in access and quality of care will persist, reinforcing social exclusion across the life course.</p> <hd id="AN0193858183-29">Day services and activity programs</hd> <p>A critical but often overlooked component of autism-informed dementia care is access to meaningful day services for those adults with progressive dementia. These programs help maintain routine, reduce behavioral symptoms, and support social engagement ([<reflink idref="bib46" id="ref198">46</reflink>]). They also provide needed respite to carers. Yet few existing services are designed specifically for neurodivergent adults with cognitive decline. Most dementia day programs are built for normative aging populations and do not accommodate the sensory, communicative, and behavioral needs of autistic adults ([<reflink idref="bib18" id="ref199">18</reflink>]; [<reflink idref="bib123" id="ref200">123</reflink>]). Transitions from adult disability day programs to generic dementia services frequently disrupt relationships and routines, increasing confusion and distress. Poorly managed transitions can worsen both cognitive symptoms and heighten carer burden. The lack of autism-informed day services reflects a major service gap. As [<reflink idref="bib94" id="ref201">94</reflink>] argue, system-level responses must be developed in collaboration with carers and autistic individuals themselves to ensure inclusive, appropriate care.</p> <p>In sum, environmental support for autistic adults with dementia must go beyond architectural accessibility to include broad, systemic reforms in care delivery. This includes the development of day programs and residential models tailored to both sensory and cognitive needs, targeted training for care professionals, and policies that prioritize health equity and innovation. Without such public health investments, disparities in access, outcomes, and safety will persist. With them, the A/DWG believes that systems of care can more effectively promote well-being, preserve autonomy, and uphold dignity across the dementia trajectory for this growing but often overlooked population.</p> <hd id="AN0193858183-30">Dementia care planning for autistic adults: adapting frameworks for neurodiverse needs</hd> <p>Despite increasing global attention to structured dementia care, national strategies often overlook the distinct needs of autistic adults ([<reflink idref="bib137" id="ref202">137</reflink>]). While person-centered care planning increasingly values shared decision-making and carer involvement ([<reflink idref="bib6" id="ref203">6</reflink>]; [<reflink idref="bib118" id="ref204">118</reflink>]; [<reflink idref="bib128" id="ref205">128</reflink>]), these frameworks rarely account for autism-specific differences in communication, sensory processing, and behavioral expression. The A/DWG emphasized the importance of integrating proactive succession planning into dementia policies, given many autistic adults' lifelong reliance on family carers.</p> <hd id="AN0193858183-31">Individualized planning across settings</hd> <p>Effective dementia care planning must align with an autistic person's cognitive, sensory, and functional profile. It requires coordination across home, group living, and memory care settings ([<reflink idref="bib5" id="ref206">5</reflink>]; [<reflink idref="bib8" id="ref207">8</reflink>]). While dementia planning for adults with ID has advanced ([<reflink idref="bib58" id="ref208">58</reflink>]), comparable autism-informed models remain underdeveloped. Planning should account for dementia subtype, co-occurring conditions, baseline function and need levels, and anticipated decline ([<reflink idref="bib128" id="ref209">128</reflink>]), especially in home settings where informal carers often lack formal support. Home-based care poses challenges when informal carers operate without systemic support. Resources from various Alzheimer's or dementia organizations offer valuable starting points but need adaptation for autistic populations (e.g., [<reflink idref="bib8" id="ref210">8</reflink>]; [<reflink idref="bib5" id="ref211">5</reflink>]; [<reflink idref="bib9" id="ref212">9</reflink>]).</p> <hd id="AN0193858183-32">Adaptable tools and frameworks</hd> <p>No dementia care and planning frameworks have been specifically developed for autistic adults, but tools designed for individuals with ID and related conditions offer adaptable foundations. The KAER Toolkit/KAER-ID component ([<reflink idref="bib49" id="ref213">49</reflink>]) and the NTG protocols ([<reflink idref="bib98" id="ref214">98</reflink>]) provide guidance for screening, early detection, and care coordination. Although globally accessible, these tools have yet to be widely adopted outside the United States and require modification for autism-specific use—such as integrating alternative communication strategies, sensory-informed environments, and individualized behavioral supports. Without such adaptations, these frameworks risk failing to address the distinct needs of this growing population.</p> <hd id="AN0193858183-33">Personal perspectives on support</hd> <p>Sustainable assistance for autistic adults with dementia must be guided, and wherever possible directed, by the voices of those with lived experience. Autistic adults consistently emphasize the importance of person-centered services that respect autonomy and dignity ([<reflink idref="bib1" id="ref215">1</reflink>]; [<reflink idref="bib10" id="ref216">10</reflink>]; [<reflink idref="bib99" id="ref217">99</reflink>]; [<reflink idref="bib135" id="ref218">135</reflink>]). Desired supports include clear and individualized communication, predictable routines, and environments that are adapted to sensory needs to minimize distress. Equally valued are staff who are well trained in both autism and dementia, the use of visual aids to support understanding, and opportunities for meaningful social participation and community connection. Access to comprehensive physical and mental health care, along with support for family and professional caregivers, is also critical. Because autism presents differently across individuals, with varying levels of difficulty in social interaction, communication, and sensory processing, effective supports must be flexible and responsive to the unique needs and abilities of each person ([<reflink idref="bib114" id="ref219">114</reflink>]).</p> <p>In sum, while person-centered care is now standard in dementia planning, the current frameworks still fall short for autistic adults. The A/DWG calls for national strategies to incorporate autism-informed approaches and succession planning to meet the complex needs of this population. Adapting tools like the KAER Toolkit and NTG protocols is essential to ensure care plans are responsive, inclusive, and effective for autistic adults with dementia and their caregiving networks.</p> <hd id="AN0193858183-34">Commentary</hd> <p>Caregiving for autistic adults with dementia presents a multifaceted and underexplored challenge at the intersection of neurodiverse conditions and neurodegenerative disease. This intersection brings unique complexities, often compounded by systemic gaps in research, clinical care, and policy.</p> <p>At the macro level, most progress has come from high-income countries, where advocacy organizations and policy agendas increasingly recognize the need for lifespan-oriented supports. Infrastructure investments are beginning to address the health and social care needs of aging autistic adults and their carers. In contrast, low- and middle-income countries often prioritize immediate public health and economic concerns, leading to limited resources for autism, dementia, or combined care. As a result, autistic adults with dementia remain largely invisible in research and practice, a disparity that calls for coordinated global efforts to promote equity.</p> <p>At the micro level, research tends to focus on those living in family homes or supervised settings, with little attention to more vulnerable groups, such as those living alone, being unhoused, or experiencing housing instability. Family carers, often aging parents or long-term partners, often face age-related health problems, isolation, and reduced support networks. As dementia progresses, caregiving demands intensify, raising the risk of burnout and disruptions in care. Despite their central role, carers struggle to access adequate post-diagnostic support.</p> <p>The A/DWG stresses the urgent need for a comprehensive, individualized response to dementia that begins at diagnosis and continues throughout the course of progressive cognitive decline. Post-diagnostic supports should be timely, autism-informed, and appropriate, integrating sensory-sensitive environments, structured routines, and accessible communication methods to enhance autonomy and well-being.</p> <p>Key elements of a robust support system include expanded respite care, community-based resources, autism-trained healthcare and support staff, specialized help for care partners, and dementia-capable housing tailored to autistic adults. The development of structured day services is also critical for maintaining daily function and alleviating carer strain. These supports must be embedded in broader systemic reforms to reduce diagnostic delays and service disparities, particularly for autistic adults with co-occurring ID, limited family support resources, or those in underserved regions. In such regions with limited resources, integrating the needs of aging autistic adults into national aging and dementia strategies is essential. This step ensures recognition and inclusion in broader health and social care frameworks.</p> <p>The A/DWG also highlights the need for longitudinal research to better understand dementia progression in autistic adults, improve early detection, and assess intervention outcomes. Inclusive residential care models featuring sensory-aware design, predictable routines, and embedded behavioral supports offer promising directions. Simultaneously, policy must prioritize carer support, providing financial relief, respite options, and managing dementia-related challenges and guidance for future planning, especially for carers who themselves may be autistic or have disabilities.</p> <p>In sum, the A/DWG calls for a change in thinking in dementia care for autistic adults, grounded in lived experience, informed by research, and guided by equity. With thoughtful, inclusive planning, care models can be built that uphold dignity, reduce disparities, and respond meaningfully to the dual vulnerabilities of autism and dementia.</p> <p>The Summit Secretariat acknowledges the generous underwriting and contributions of the Reena Organization, the Butz Family Fund, the Azrieli Foundation, Temple University, the University of Stirling, the Canadian Consortium, and the National Task Group on Intellectual Disabilities and Dementia Practices for their support of the Second International Summit on Intellectual Disability and Dementia. Partial support for M.P.J. and K.P.S. for the development of this paper was provided by a grant from the Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion, the Healthy Brain Initiative Award #1 NU58DP006782-01-00, to the University of Illinois Chicago. 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American Journal of Alzheimer's Disease and Other Dementias, 31(6), 502–507. https://doi.org/10.1177/1533317516650806</bibtext> </blist> </ref> <ref id="AN0193858183-36"> <title> Footnotes </title> <blist> <bibtext> Matthew P Janicki</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0003-1053-1748 Philip McCallion</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0001-5129-6399 Nancy Jokinen</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0002-4662-3049 Frode Kibsgaard Larsen</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibtext>https://orcid.org/0000-0003-4929-4137 Dawna T Mughal</bibtext> </blist> <blist> <bibtext>Graph</bibtext> </blist> <blist> <bibl id="bib10" idref="ref56" type="bt"></bibl> <bibtext>https://orcid.org/0009-0008-7665-1519 Christina N Marsack-Topolewski</bibtext> </blist> <blist> <bibl id="bib11" idref="ref57" type="bt"></bibl> <bibtext>Graph</bibtext> </blist> <blist> <bibl id="bib12" idref="ref47" type="bt"></bibl> <bibtext>https://orcid.org/0000-0002-8178-2897 Karen Watchman</bibtext> </blist> <blist> <bibl id="bib13" idref="ref153" type="bt"></bibl> <bibtext>Graph</bibtext> </blist> <blist> <bibl id="bib14" idref="ref10" type="bt"></bibl> <bibtext>https://orcid.org/0000-0003-0000-3589 Flavia H Santos</bibtext> </blist> <blist> <bibl id="bib15" idref="ref62" type="bt"></bibl> <bibtext>Graph https://orcid.org/0000-0003-2592-9038</bibtext> </blist> <blist> <bibtext> Ethical approval was not required for this study, as it did not involve human participants, animal subjects, or the collection or analysis of identifiable or sensitive personal data. The work was limited to non-human-subjects activities and did not fall within the scope of institutional review board or ethics committee oversight.</bibtext> </blist> <blist> <bibtext> Informed consent was not applicable for this study, as no human participants were involved and no personal or sensitive information was collected or used.</bibtext> </blist> <blist> <bibtext> Matthew P Janicki: Conceptualization; Investigation; Methodology; Project administration; Supervision; Writing—original draft; Writing—review &amp; editing.Philip McCallion: Formal analysis; Writing—review &amp; editing.Nancy Jokinen: Investigation; Writing—original draft; Writing—review &amp; editing.Frode Kibsgaard Larsen: Investigation; Writing—review &amp; editing.Dawna T Mughal: Investigation; Writing—original draft; Writing—review &amp; editing.Kathryn P Service: Writing—original draft; Writing—review &amp; editing.Tiziano Gomiero: Writing—original draft; Writing—review &amp; editing.Christina N Marsack-Topolewski: Investigation; Writing—review &amp; editing.Karen Watchman: Conceptualization; Investigation; Writing—original draft; Writing—review &amp; editing.Flavia H Santos: Investigation; Writing—original draft; Writing—review &amp; editing.Seth M Keller: Writing—review &amp; editing.Shahin Shooshtari: Writing—review &amp; editing.Anupam Thakur: Writing—review &amp; editing.Vikram Palanisamy: Writing—review &amp; editing.</bibtext> </blist> <blist> <bibtext> The authors received no financial support for the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibtext> The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.</bibtext> </blist> <blist> <bibtext> The general content of this paper is derived and adapted from the Second International Summit report: Autism/Dementia Work Group (2024). Autism, Aging, and Dementia: A Consensus Report of the Autism/Dementia Work Group of the Second International Summit on Intellectual Disabilities and Dementia. ID/Dementia Summit Secretariat. The report is available at https://<ulink href="http://www.thentg.org/summit-secretariat">www.thentg.org/summit-secretariat</ulink>.</bibtext> </blist> <blist> <bibtext> "'Post-diagnostic support" refers broadly to resources available after a dementia diagnosis, while "supports" denotes specific pharmacological and non-pharmacological services for individuals and carers. This article uses support to describe the overarching concept and supports for discrete services. While the term "non-pharmacological supports" may not be universally applied, it is used here to represent one dimension of this dichotomy. We also acknowledge that "ecopsychosocial intervention," as proposed by [141], may serve as an alternative term and is considered conceptually equivalent in this context.</bibtext> </blist> <blist> <bibtext> Interchangeably used with Mild Neurocognitive Disorder.</bibtext> </blist> </ref> <aug> <p>By Matthew P Janicki; Philip McCallion; Nancy Jokinen; Frode Kibsgaard Larsen; Dawna T Mughal; Kathryn P Service; Tiziano Gomiero; Christina N Marsack-Topolewski; Karen Watchman; Flavia H Santos; Seth M Keller; Shahin Shooshtari; Anupam Thakur and Vikram Palanisamy</p> <p>Reported by Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib24" firstref="ref3"></nolink> <nolink nlid="nl2" bibid="bib65" firstref="ref4"></nolink> <nolink nlid="nl3" bibid="bib87" firstref="ref5"></nolink> <nolink nlid="nl4" bibid="bib125" firstref="ref6"></nolink> <nolink nlid="nl5" bibid="bib124" 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| Items | – Name: Title Label: Title Group: Ti Data: Autism, Dementia, and Post-Diagnostic Support: A Consensus Report from the Second International Summit on Intellectual Disabilities and Dementia – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Matthew+P%2E+Janicki%22">Matthew P. Janicki</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1053-1748">0000-0003-1053-1748</externalLink>)<br /><searchLink fieldCode="AR" term="%22Philip+McCallion%22">Philip McCallion</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-5129-6399">0000-0001-5129-6399</externalLink>)<br /><searchLink fieldCode="AR" term="%22Nancy+Jokinen%22">Nancy Jokinen</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-4662-3049">0000-0002-4662-3049</externalLink>)<br /><searchLink fieldCode="AR" term="%22Frode+Kibsgaard+Larsen%22">Frode Kibsgaard Larsen</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-4929-4137">0000-0003-4929-4137</externalLink>)<br /><searchLink fieldCode="AR" term="%22Dawna+T%2E+Mughal%22">Dawna T. Mughal</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0008-7665-1519">0009-0008-7665-1519</externalLink>)<br /><searchLink fieldCode="AR" term="%22Kathryn+P%2E+Service%22">Kathryn P. Service</searchLink><br /><searchLink fieldCode="AR" term="%22Tiziano+Gomiero%22">Tiziano Gomiero</searchLink><br /><searchLink fieldCode="AR" term="%22Christina+N%2E+Marsack-Topolewski%22">Christina N. Marsack-Topolewski</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-8178-2897">0000-0002-8178-2897</externalLink>)<br /><searchLink fieldCode="AR" term="%22Karen+Watchman%22">Karen Watchman</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-0000-3589">0000-0003-0000-3589</externalLink>)<br /><searchLink fieldCode="AR" term="%22Flavia+H%2E+Santos%22">Flavia H. Santos</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-2592-9038">0000-0003-2592-9038</externalLink>)<br /><searchLink fieldCode="AR" term="%22Seth+M%2E+Keller%22">Seth M. Keller</searchLink><br /><searchLink fieldCode="AR" term="%22Shahin+Shooshtari%22">Shahin Shooshtari</searchLink><br /><searchLink fieldCode="AR" term="%22Anupam+Thakur%22">Anupam Thakur</searchLink><br /><searchLink fieldCode="AR" term="%22Vikram+Palanisamy%22">Vikram Palanisamy</searchLink> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Autism%3A+The+International+Journal+of+Research+and+Practice%22"><i>Autism: The International Journal of Research and Practice</i></searchLink>. 2026 30(6):1635-1653. – Name: Avail Label: Availability Group: Avail Data: SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 19 – Name: DatePubCY Label: Publication Date Group: Date Data: 2026 – Name: SourceSuprt Label: Sponsoring Agency Group: SrcSuprt Data: National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) (DHHS/CDC) – Name: NumberContract Label: Contract Number Group: NumCntrct Data: 1NU58DP0067820100 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Dementia%22">Dementia</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Multiple+Disabilities%22">Multiple Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Training%22">Caregiver Training</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Role%22">Caregiver Role</searchLink><br /><searchLink fieldCode="DE" term="%22Drug+Therapy%22">Drug Therapy</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Environmental+Influences%22">Environmental Influences</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1177/13623613261416670 – Name: ISSN Label: ISSN Group: ISSN Data: 1362-3613<br />1461-7005 – Name: Abstract Label: Abstract Group: Ab Data: Post-diagnostic support is a critical yet underdeveloped aspect of dementia care, especially for autistic adults who present with distinct cognitive, sensory, and communication needs. Although interventions such as medication management, psychosocial support, environmental modifications, and carer training are known to improve outcomes, their relevance and accessibility for autistic individuals remain poorly understood. As part of the Second International Summit on Intellectual Disability and Dementia, an international working group examined the intersection of autism and dementia with a focus on post-diagnostic care. Drawing on interdisciplinary expertise, the group identified key barriers and opportunities in clinical practice, caregiving, and service delivery. Recommendations are organized across seven areas, including models of post-diagnostic support, caregiving contexts, pharmacological and non-pharmacological interventions, environmental adaptations, and care planning. The discussion emphasizes the complex needs of autistic adults--many of whom have co-occurring intellectual disabilities, psychiatric conditions, or chronic health issues--and the need for individualized approaches that account for sensory sensitivities and communication differences. Existing dementia care frameworks often fail to address these complexities, resulting in significant service gaps. The report calls for urgent investment in research, workforce training, and policy reform to promote equitable, autism-informed post-diagnostic support and improve quality of life for this underserved population. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2026 – Name: AN Label: Accession Number Group: ID Data: EJ1506442 |
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